Baldies' Blog began originally in the UK by a 26 year old journalist with a blood cancer on a mission to inform the world about bone marrow donation.

He has since died, and I took on the cause of making cancer care more transparent for everybody.

Cancer is a disease that will touch everybody through diagnosis or affiliation: 1 in 2 men will be diagnosed and 1 in 3 woman will hear those words, "You Have Cancer."

I invite you to read how I feel along my journey and
how I am continuing to live a full life alongside my Hodgkin's lymphoma, with me controlling my cancer, not my cancer controlling me.

I hope that "Baldies' Blog" will prepare you to handle whatever life sends you, but especially if it's the message, "You Have Cancer."

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Wednesday, September 21, 2011

Be Afraid

I've been concerned since a posting months ago (I think in April or May), that some of my comments were taken out of context or misunderstood, especially the part where I told the triage nurse I had chest pain and was quickly brought into a treatment room. 

Clearly, I was right to be concerned. 

Thanks, anonymous, for readdressing the issue with your comment, "Why didi't you use your little DHMC ER trick and say he ws had chest pain? It got you to the front of the line." 

I can't even find the posting, but let's go back. I remember it well.

The day I ran to the ER, I was experiencing what was later discovered to be a severe allergic reaction with an incidental finding of a pulmonary embolism. 

An allergy alone would have gotten me "to the front of the line," but the point of chest pain complaint in the writing was not supeficial. 

It was very spiritual, and these deeply spiritual situations are difficult to explain to others who have not had long term illnesses, who have different belief systems, who have not been in life or death situations, etc.,etc., but I'd very much like you all to understand that there is something greater than us in the universe that is there to help us through my own catastrophes. 

Traveling to the hospital I floated between coma and consciousness. I'd speak unable to differentiate between the reality of the outside world and my thoughts, dreams, or hallucinations. 

I was hovering between life and death, this world and the next. 

During these periods, I sometimes have visions. I may receive messages.

 I can often trace a life saving intervention to a deceased loved one. 

A week earlier, my family had lost a lifelong friend, Mrs. L, needlessly to a Pulmonary embolism. This friend's sister died of leukemia when I was 8 leaving behind 3 beautiful young children. 

With them, I had my first experience with cancer, and I think of the surviving family often. 

Mrs. L's death from a PE could have been prevented. Her leg started to swell after a period of immobility which allowed her blood to stagnate and create the clot that eventually went to her lungs, killing her in her sleep in her 50s. 

She'd sought care in the ER twice in the week before and had gone undiagnosed. 

Dying in my sleep is a fear of mine. I don't want to taint our family home for X, and x often crawls into bed with us. 

One of my hallucinations, or so I thought, during our trip to the ER was a feeling of chest pain and heaviness, but with all my meds, I don't think I could have felt chest pain. 

I got it in my head that the professionals wouldn't see how seriously ill I was and I would die waiting.

I'm alive today, because through divine intervention, chest pain made it on my list of symptoms. 

Reporting "chest pain" to the nurse didn't just get me "to the front of the line," it got me a CT looking specifically for pulmonary embolisms. 

Unlike my friend, my emboli would not have been discovered. They were small but would have continued growing.

The message of the posting was not "tell the ER you have chest pain for fast care," it was "divine intervention exists." 

Your prayers are working!

I'm saddened that of all my writings, this had been a stand out message. 

Thank you all who continue to pray for me. The prayers are working. 

Ironically, as J, X, and I decided to leave the ER, X pointed to his heart and said, "I hurt here."
"Where?" I asked. 

"Well, around here." He said, motioning around his heart. 

I was about to turn his wheelchair around and drive it to the triage room when x saw the look on my face and said, "No, nevermind. I'm fine."

 I've been listening to his heart at least daily. Its been sounding fine, and we drove out of there instead. 

But sadly, it has started.

My predictionns regarding the healthcare system are here.

What was once isolated to overwhelmed, understaffed, poorly funded inner city hospitals has spread to what once were the safest places on earth.            

As a young nursing student practicing triage, I was forced to send bleeding, assaulted women back to the waiting room and people who came in to restart life through detox back to the streets, because until they have a seizure, detox is not an emergency.

I saw patients grasping their stomachs and vomitting bile, but that still didn't earn immediate admittance.   

What did? 

Respiratory issues (we had a whole room where people could sit and take their nebs together) cardiac patients, mental status changes and severe injuries, the severity of which was judged by the triage nurse, the St.Peter of the golden gates that lead to health care. 

People waited huddled feverish in the waiting room, sick and coughing for 18 hours only to be diagnosed with TB. 

 A cough doesn't put you high up on the emergency list. Having HIV with weight loss and a cough does, but there's no law requiring anybody to disclose that info, even if it will infect everybody the comes in contact with.  

Now, my rural ER experiences have been comparable.

Be scared.


Anonymous said...

that did not stand out to me hill and never will, when you are very sick like that panic strikes and like you said you saw something. loves and prayers to you and the family and hope x is feeling better :)


Anonymous said...

This is anonymous, I have been you
friend, you caretaker, someone who has said many prayers for you. When you played your little April fools joke I cried for hours. Each time the cancer as returned I have cried. Like you I am dying too. No, not from cancer. I have been sick for many years and they will never be a cure. I really have coded and died. You are very lucky to have such a wonderful and supportive family. Mine has all passed and are waiting for me. It is very hard to feel sad for you at times when you are talking about all the things you get to go with you friends. And you talk a lot about not having money, but there seems to be a lot of shopping therapy. For some of us we don't have all those things surrounding our illnesses, and its not that we don't suffer. You werw the one who talked about getting the attention in the DHMC ER, you opened the door on that one. I hope X is OK. Just remember you will be surrounded by love no matter what. Some of us will just be alone.